Monday, 2 February 2009

What will this week bring..........

Well Ryan and I had a pretty quiet and non-eventful weekend. The only down side was the noticeable difference with Ryans eating.
A couple of months ago Ryan had a pH study done which showed he had severe acidic reflux for over 80% of the 24hrs he was monitored!! This was a bit of a surprise to us and definitely the docs!! A discussion on the phone with his neuro (dont ask!!) and she informed us that its pretty likely he's gonna need a gastrostomy.
Lots of mixed emotions from myself and Craig but I guess we ended up getting to the point of accepting he's in pain and this will hopefully help.

Fast forward to last week and another meeting with neuro (again dont ask!!!) and got a 'different' impression from her............gastro maybe not looking so definite!! Came out of there not knowing what the heck was going to happen with him. Nae good!!
At various points throughout last week, Ryan has also been sick and he is never sick, not even as a baby. Towards the end of last week he was starting to 'object' to food too...............normally Ryan is a brilliant eater - not at all fussy as long as the consistency is right!!! Today he refused to each lunch at school - this is SO NOT like him!!

Tomorrow we have an(other!) appt with ENT regarding the difficulties he has breathing when he's sleeping - resp doc says 'its upper airway so nothing he can do' but ENT doc 'cant see any obstructions so not much he can do'!! Got the funniest feelings it going to be another one of those total fob off, waste of time appts!!

Anyway, there is a point to the above ramble...........hopefully his weight will be checked tomorrow which will show us if he's now losing weight.............hopefully he's just had a growth spurt and that's making him look skinny...........................

On Thurs we have the meeting with the neuro (you know the score.....*sigh*) and the gastroenterologist to discuss 'what happens next'.

So please think of us tomorrow and Thurs..............fingers and toes crossed we get some sort of 'positive outcome' from them both!!

Oh and I also folded and emailed the geneticist - very bad I know but I just couldn't wait any longer................she told us a few months ago that we'd get another appt to see her when the results of the CGH Array were back. We have had the appt through since new year but today I crumbled and asked her if the test found anything. There is no way I could sit in her office and hear the words 'I'm sorry but it didn't find anything'. There is so much riding on this result - if they dont find anything then she has said there isn't much more they can do, he's almost 6 years old and and to hear that would crush me.................

Haven't heard back from her yet - which is killing me!! Hasn't this woman an OUNCE of decency!! ;-)) I was born with the pretty huge genetic defect of having absolutely NO PATIENCE and she's making me ill!! ;-)))) That meeting is on 18th Feb - exactly one week before Ryans birthday......................

Julie x

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